Law Dictates Who Decides on Care for the Incapable

It is one of those medical quandaries often faced by families dealing with older and dying parents: Who makes decisions for patients who cannot make their own and have not left written instructions?

It took more than 17 years for New York to answer the question, but on Tuesday, Gov. David A. Paterson signed a law providing a road map for such matters.

The bill sets up an order for who is responsible for such decisions, ranking spouses and domestic partners first in a hierarchy of surrogates (unless there is a court-appointed guardian), followed by children, parents, siblings and close friends.

The law also allows the surrogates to consider not just the patient’s wishes, but also — if those wishes cannot be known — the patient’s best interests.

For years, legislators wrangled over the bill: Some insisted that it include language protecting the fetus of an incapacitated pregnant woman; others argued over whether to include domestic partners as decision-makers; and some debated when food or water could be withheld in making health care decisions, including end-of-life decisions.

Until now, advocates of the bill said, New York State had one of the harshest standards for determining whether to withdraw or withhold life-sustaining treatment of an incapacitated patient.

Case law based on two court decisions from the 1980s held that there had to be “clear and convincing evidence” of what the patient would have wanted. Some hospitals and doctors accepted the word of relatives who said things like, “I talked to my mother, and she said she never wanted to be on a ventilator.” Others, however, refused to withhold treatment without written documents like a health care proxy, a do-not-resuscitate order or a living will.

Yet, advocates of the bill said, most New Yorkers have not filled out such written instructions for their care at the end of life, and even if they have, the forms sometimes lack the nuance needed to make the right decision.

The old case-law standard, said Robert Swidler, general counsel for Northeast Health, a health care system in the Albany region, “put hospitals and nursing homes in a very difficult position.”

He said the new law would bring ethically, emotionally and medically fraught decisions “into sunlight.”

Senator Thomas K. Duane, a sponsor of the bill, said that recognizing domestic partners was an important step toward “full equality for all families.”

The law covers treatments like ventilators, feeding and watering tubes, surgery, dialysis and antibiotics for patients who might be unconscious, brain damaged, suffering from dementia or dying and unable to make their wishes known.

An orderly procedure for making health care decisions was first proposed in 1992 in a report by a state Task Force on Life and the Law. The next year, Assemblyman Richard N. Gottfried of Manhattan introduced a bill laying out how decisions would be made.

While that bill and subsequent versions became bogged down in ideological debates, Democrats and Republicans eventually found common ground on issues that once seemed explosive. “To my mind, this is a middle-of-the-road bill,” said Senator Kemp Hannon, a Nassau County Republican.

The New York State Right to Life Committee enthusiastically supported the new law because it protects a patient’s right to insist on treatment and to transfer to another hospital if a doctor objected, said Lori Kehoe, executive director of the committee.

As for the language about fetuses and pregnant women, she said, “It’s an absurdity that someone making a decision about whether or not to protect the life of a mom has not considered the baby.”

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